LETTERS From CAMP Rehoboth |
Another Life Stolen by AIDS |
by Mubarak Dahir |
The first time I encountered Kiyoshi Kuromiya, I didn't know that he was one of the world's foremost AIDS activists, or that he was one of the individuals who was leading a revolution not only in HIV-care, but in patient care in general by demanding that doctors fully involve, inform and educate people about their own treatment decisions. I didn't know he was a one-man library of medical and pharmaceutical knowledge about AIDS, or that he published one of the most influential and respected journals of HIV care, Critical Path. I didn't know that he was respected not only within the activist community, but within the corporate drug culture as well, where executives and researchers actively sought outand heededhis advice and counsel on clinical trials. I didn't know that he had a life history of commitment to social justice causes, long before anyone heard of ACT UP or even AIDS. I couldn't know then that he was born in a government "internment camp" for Japanese descendents living in the United States in 1943. Or that he was scarred by a blow to the head from Alabama sheriffs who didn't appreciate his voter-registration work in Montgomery during the black civil rights movement of the 1960's. Or arrested for protesting America's tragic involvement in Vietnam. I couldn't know that years later, in 1996, he would be one of the plaintiffs to take their challenge of a congressional law limiting information on the Internet all the way to the United States Supreme Courtand win. And it wasn't until I read the obituary telling me he died May 10just one day after his 57th birthdaythat I knew he was a nationally ranked Scrabble player and master of yoga. But what I did know the first time I encountered this short man with a long, shimmering black ponytail, was that he was a man of resolute principle. The first time we met, he came to my defense. I didn't know who he was, and he barely knew of me, either. What he did know of me at the time, I later found out, he didn't like very much. But that didn't stop him from standing up for what he knew was right. I first crossed paths with Kiyoshi in late 1990 in Philadelphia. I had just moved to the city where he was living, and was attending my first ever meeting of Philadelphia ACT UP, a group he helped found. Writing for a local alternative publication there, I had recently written a critical essay wondering out loud if the group had erred in shouting down a panel of mayoral candidates gathered to talk to the public about where they stood on AIDS. After all, the panel was organized by the local AIDS agencies, and was heavily attended by people with AIDS who, I argued, genuinely wanted to pose questions to the candidates they would soon be voting for. Instead, ACT UP crashed the evening, shouting down the candidates until they got up and walked off stage. ACT UP also grabbed the headlines in the next day's daily newspaper. As was customary, the ACT UP meeting started by going one-by-one around the crowded room and letting everyone introduce him or herself to the group. When it became my turn, I said my name and that I was a reporter. Before I could get anything else out of my mouth, an ACT UP member who had readand viscerally disagreed withmy essay, started shouting and screaming and pointing his finger right in my face, accusing me of everything from being a sell-out to the patriarchy to killing people with AIDS by the lies I spread in my writing. Others there were equally disenchanted with my essays, and it didn't take long for a mob mentality to take over, with some demanding I be ejected from the meeting. But to this backdrop of angry chaos, two ACT UP members stood up and took the floor. One of them was Kiyoshi Kuromiya. Gentle and soft-spoken, he was a counterbalance to the groups' important though often unfocused anger and tempernot just that night, but on many occasions, I know now. He was the perfect antidote to those for whom ACT UP was little more than a dress code of black boots and white T-shirts and leather jackets who came only to vent their anger and frustration in periodic street theater. Thanks largely to Kiyoshi's pleading of freedom of speecha freedom, he reminded the others, that ACT UP thrived onI got to stay for the meeting. Later, I tried to thank Kiyoshi, but he let me know in no uncertain terms that he hadn't done me any favors. In fact, he strongly disagreed with my essay as well. But, he said, it was the principle that mattered. After that night, I was able to attend many more ACT UP meetings without acrimony, and even became friends with many in the group. Kiyoshi and I were never really friends. He was too busy for that, publishing Critical Path, setting up his web site of AIDS information, flying to international conferences to speak on panels, running a "community medicine chest" to help patients who couldn't afford the expensive drugs get them free, and starting an underground medical marijuana "buyer's club"all from his one-bedroom apartment on Lombard street. Kiyoshi's apartment was just blocks away from my own, and I frequently would take a walk to it, and wait on his couchbetween stacks of research papers and bottles and bottles of drugsto talk to him about the latest story I was writing on the epidemic. No matter how busy he was, he always took the time to talk. Above all else, Kiyoshi knew how important information was. It was his biggest passion and greatest weapon in the fight against AIDS. And it hit me, as I sat saddened and reading the many obituaries published in his honor, that even in his death he stayed true to that mission. In an age where even those in the gay community talk too rarely about AIDS, in a time when the sense of urgency about the epidemic has waned, and when we put too much faith in "miracle drugs" that are not living up to their promise, Kiyoshi's death was a stark reminder that the disease is still stealing precious life away from us. Mubarak Dahir is a regular contributor to Letters from CAMP Rehoboth. He receives e-mail at MubarakDah@aol.com. |
LETTERS From CAMP Rehoboth, Vol. 10, No. 6, June 2, 2000. |